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Old 03-29-2010, 10:48 AM #1
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Arrow Boston Scientific Mini Rechargeable SCS

Okay, I told Rrae I would work up the gumption to make this so. Here we go with a thread which will hopefull elicit posts specific to the ANS EON Mini SCS.

I used to be a hard charging executive type zipping from coast to coast giving my best for a company that had been very exciting for me as a career. I had stayed with them 27 years. Climbed ladders. Served to the best of my ability, and thought I had arrived. Keeping fit was an imperative for me and I did much in the way of mountain biking, alpine skiing [my son and daughter were my ski buddies although they preferred snowboards], hiking, hunting [I had a skill set which was fun, mostly from the concept of tracking hard to locate and elusive quarry much more so than the end game], DANCING with my God given blessing of a wife of 36 years [I had been a wall flower for many years and finally relented and TOOK dance lessons to give this greatest of pleasures to my wife], playing sports with my family, you know like volleyball [sand court in the backyard], basketball, baseball, plus the usual array of gym equipment we had collected over the years. Short answer, I was having fun in this life I had been allowed.

Then there was this rapidly unfolding, trauma producing, and TERROR inspiring event of a car wreck I lived on I-70, a road which happened to separate me one morning from the flight I was to take to L.A. for more of that business which provided for my family. I was the car in front of a multi-car high speed roll over event which in a flash changed my life. My car became a non-musical accordion in which I sat. A friend who, unknowing, drove by the wreck said he prayed for whoever had been involved in "that one." So, I had the customary litany of stuff affect me: the concussion, the arms which were no longer doing right things without pain, and a back which produced agony which drove me to agony which pulled screams from my throat only a pillow to my face would muffle. Therein my life had changed. One moment thinking it had been good not to stop for that Starcoffee so I would not be in a hurry, the next wondering what had happened. 24 visits to the operating room later, here I am!

Now one would think in five years and so many medical occasions medicine could reconstruct me as some sort of a Borg wannabe or maybe a bionic super something. Not so! There has been pain. A movie I have watched over and over again with fun has been Knight's Tale, and one of the squires has this oh so humorous thing about telling someone else he is going to inflict "pain, such pain." I am there. Seems I must have attained a new level of education in pain. Do they award degress for this? Something honorary?

My wife has patiently accompanied me to most of my medical appointments. She is my rock [well, from a non-religious perspective] and I adore her. She has endured my screams, my guttural cries, gnashing of teeth, writhing on the floor..... all of the experiences that have driven any of the rest of you to this forum. She has been there and I am ever grateful.

So surgery after surgery, pill after pill, therapy upon therapy, acupuncture, massage, chiropractic, this and that and STILL I go through this pain that BURNS and spasms that JERK my limbs. Funny, but it seems I have chronic neuropathic pain, the incidence of which is empirically demonstrable through one of those fun sessions with the EMG machine. At least we have a clue it is not all in my head..... well, not all of it.

So, this brings us to this morning. It is 29 March 2010. I sit here telling my wife I will get off of the computer right away because we go for the second meeting with my next surgeon in line, the fella who may implant the ANS EON Mini in me through that two step surgical process involving at first trial, and then the real deal.

I have been through the scared stuff. I have known and well remember the pain of deep penetration back surgery multiple times. I can do this. The EMG and MRI have been done and the surgeon will review these with me today... at least I hope he will. I will let you know what I learn.

Now to the point. It would be nice if anyone else out there has received ANS device implant work and what their experiences may have been. Was it favorable? Were there issues? Are you pleased? Is that ever present pain level more manageable now? How was it working with the ANS reps? Have you regained any of your former life, and if so in what ways?

I will share if you will. Oh, and next, in early April I get to meet with the psychiatrist to learn whether I meet the standards of an acceptable candidate. Cross your fingers or pray for me if you will.

Keeping my humor, I hope,
Mark56
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Old 03-29-2010, 10:26 PM #2
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Default 29 March

The appointment went so well with my surgeon. He had viewed the EMG and MRI and came into the room ready to discuss options. After talking a few minutes, he spoke highly of all SCS units available in the market as he has implanted each of them according to patient wishes. The green light was given to proceed with the remaining steps of Trial and psych eval before the permanent implant. He spoke of his appraisal of me and his feeling the psych eval might prove to be an unnecessary although mandated step, in view of our lengthy discussion. Even so, I am ready to go through with the eval just to assure my fitness for the process.

Regarding the Trial, he briefed me on the necessity to maintain a steady frame so as not to disturb the leads as they will not be tied down except by those strips of tape Rrae mentioned to me [and I will apply more as you suggested, Rrae] and, of course, by the cummerbund stylin' waist belt to hold the temporary generator. Dancing will have to await fully healed in place mounting of the permanent hardware. I have placed the call to my physiatrist seeking the calendaring of the Trial.

I guess next step is to the Insuror, awaiting authorization, then we see. I felt most heartened by today's meet. Meantime the waiting continues.....


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Old 02-15-2012, 05:57 PM #3
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Default Hi Mark56

I just wanted to stop in and say what an inspiration you are! Your story and your desire to just be a good family man helps all of us. I hope that you can get some of your life back. I will keep you in my prayers and hope that the SCS pump can help you. ginnie
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Old 02-15-2012, 09:40 PM #4
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Heart Oh Ginnie!

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Originally Posted by ginnie View Post
I just wanted to stop in and say what an inspiration you are! Your story and your desire to just be a good family man helps all of us. I hope that you can get some of your life back. I will keep you in my prayers and hope that the SCS pump can help you. ginnie
How deeply I am touched by the visage of you reaching out to touch your computer screen as you pray for my, for my family, for us all. God grants us so many blessings, and it is ever true YOU my dear friend, are one of them.

Working and living and loving all of those who need love, praying for all who need prayer, and then last week I actually was on the dancefloor for a Valentine's dance at a local Grange Hall with my dear blessing of a wife. I would say I have much of life about which to be grateful and feel blessed.

Thankful to you and all who pray, and to God who hears and acts,
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Old 03-30-2010, 01:02 AM #5
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Laugh Mark ! That was Awesome !

May I be the first to pounce on your new thread and say .... !

You are gifted with an incredible charismatic style of writing by the way! ....it's a fun 'read' !
Your story is not only touching, but inspiring as well! You are a wonderful family man who asks no more than to simply get your 'life' back.........and with your determination and wit, I have NO doubt you will !

Thank you, Mark, for jumping on board this wonderful ship and sharing your adventure with us! This is the place we learn and grow from one another, we laugh, we cry, we vent, and we celebrate .......it takes true character to be able to reach out to one another, as we struggle with the unfortunate set of circumstances that brought us each here...

I personally consider it the most rewarding 'sacrifice' of all, just to have the pleasure of getting to know others like yourself......almost makes the pain worth suffering....

.......ok, good Lord this is getting 'sappy' I better quit while I'm ahead!

We'll anxiously await your updates to your thread!
We're all in this together......

You and your precious family will be in my prayers every step of the way.......

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Old 03-30-2010, 07:15 AM #6
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Default

THANK YOU MARK for sharing your journey and your story .
Back in 2002 when I had my SCS for face pain ..well it took me a very long time to share mine, because i was the first to get SCS for face pain. not many face pain people understood or related to me but now that I have been sharing for the last 6 or so years trying to help/ supporting others I find it so healing and almost like a blessing to be able to share and help. sadly I find at least with t.n. folks once they get away from the pain once they find a way to control the pain monster ..well they just never look back .BUT NOT EVERYONE is like that there are a few angels who even tho they have control they cant ever forget and they share in hopes of helping just one other person.... I am one of those.
I feel like a new one here but so glad there is a place for SCS be it for back or legs or face. I have been member here for a couple years and now find a new place I "fit in" .
I thank you so much for sharing .I am so sorry you and your family have been dealing with and going threw this. but I have high hopes that Stimulation device will help you.
I have you and your family in my prayers and positive thoughts.
Please keep us updated on how things are going for you.
low pain and positive healing energy to you and yours.

God Bless
PEACE
BMW
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Old 04-09-2010, 08:40 PM #7
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Default 9 April

Allright, so the morning arrived. April 9. The day set for my SCS preparative psych eval. All of you who reached out had given me assurances life would go on following the eval. It was just one of those Things to accomplish along the path of pain management.

We were on time. The office was pleasant, decorated in a Southwest motif, complete with waiting room chairs designed for inclusion in any PAIN practitioner's office. You know the kind. Those "I'm gonna wrench the pain from your very SOUL type of chairs. Straight back chairs. The ones with little padding...... and I sat.... for a bit.

Then the doctor came greeting me and he was really very kind in manner, offering me coffee, then escorting me back to his office. And there it was.... the waiting room chair of my dreams. A recliner. Complete with the integrated footrest. The kind EVERY pain practitioner should have in their WAITING ROOMS.

Relaxing, I lay back, levered up the footrest, took every advantage of the comforts readily provided and we started. The perfunctory identification part of the interview proceeded until before you know it, we were passing through the entirety of the litany. All of the questions relating to initial trauma, the follow on care and surgeries, the effect on life pain has wrought, a closely packed barrage of information which felt easy to provide. I felt comfortable discussing what has gone before, because I knew my presence was mandated to help in assessing my need, knowledge, understanding, expectations, hesitations, and state of life realities. Before I knew it, the time for discussion had lapsed. I had given my best.

Next was the followon millieu of questions in a battery of written multi-choice answer blocks. They were OK. At least I am not a practicing professional politician, because questions regarding whether I had ever lied would have presented the ultimate conundrum.

All of a sudden, time had burst me free from the office. It was over. Darn near the last of the hurdles to Trial SCS implant has faded to my past. I didn't mind it after all. Hopefully this doctor concurs with my others.

Now to the insurance company and the pre-authorization. Ball is in the court of doctor/insuror. One step closer. Maybe I will get to go for SCS after all.

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Old 04-09-2010, 11:39 PM #8
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Thumbs up Successfully jumped thru another 'hoop' !

YAAAAAAAY





We all KNEW you would pass with flying colours!!!
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Old 04-18-2010, 12:47 AM #9
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Default The excitement is mounting....! :)

Mark
I wanted to 'bump' your thread up cuz I am really getting good vibes about your upcoming procedure! Things are falling in line and soon you'll have an actual date for your procedure.....

The way you've been soaking up every tidbit of information you can from everyone's experiences and the amount of support you've spread around since you came on board..... I just wanted to share with you that I've got that feeling of "I know that I know" kind of thing..... (it's a true form of "HOPE")......
and I'm actually getting excited to see how your story unfolds.....
And you being a man of FAITH.........you've got it made in the shade my friend....! I can see you having everything you've been confessing, even above and beyond!
I am so grateful that you latched on to this forum and are sharing your play by play.......you are so appreciated!


<<<-----this will be YOU
after your post op restrictions are over.......you're gonna tear up the dance floor and your wife is gonna think you've completely gone mad!!
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Old 05-01-2010, 02:28 AM #10
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Default ANS EON Mini

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Originally Posted by Mark56 View Post
Okay, I told Rrae I would work up the gumption to make this so. Here we go with a thread which will hopefull elicit posts specific to the ANS EON Mini SCS.

I used to be a hard charging executive type zipping from coast to coast giving my best for a company that had been very exciting for me as a career. I had stayed with them 27 years. Climbed ladders. Served to the best of my ability, and thought I had arrived. Keeping fit was an imperative for me and I did much in the way of mountain biking, alpine skiing [my son and daughter were my ski buddies although they preferred snowboards], hiking, hunting [I had a skill set which was fun, mostly from the concept of tracking hard to locate and elusive quarry much more so than the end game], DANCING with my God given blessing of a wife of 36 years [I had been a wall flower for many years and finally relented and TOOK dance lessons to give this greatest of pleasures to my wife], playing sports with my family, you know like volleyball [sand court in the backyard], basketball, baseball, plus the usual array of gym equipment we had collected over the years. Short answer, I was having fun in this life I had been allowed.

Then there was this rapidly unfolding, trauma producing, and TERROR inspiring event of a car wreck I lived on I-70, a road which happened to separate me one morning from the flight I was to take to L.A. for more of that business which provided for my family. I was the car in front of a multi-car high speed roll over event which in a flash changed my life. My car became a non-musical accordion in which I sat. A friend who, unknowing, drove by the wreck said he prayed for whoever had been involved in "that one." So, I had the customary litany of stuff affect me: the concussion, the arms which were no longer doing right things without pain, and a back which produced agony which drove me to agony which pulled screams from my throat only a pillow to my face would muffle. Therein my life had changed. One moment thinking it had been good not to stop for that Starcoffee so I would not be in a hurry, the next wondering what had happened. 24 visits to the operating room later, here I am!

Now one would think in five years and so many medical occasions medicine could reconstruct me as some sort of a Borg wannabe or maybe a bionic super something. Not so! There has been pain. A movie I have watched over and over again with fun has been Knight's Tale, and one of the squires has this oh so humorous thing about telling someone else he is going to inflict "pain, such pain." I am there. Seems I must have attained a new level of education in pain. Do they award degress for this? Something honorary?

My wife has patiently accompanied me to most of my medical appointments. She is my rock [well, from a non-religious perspective] and I adore her. She has endured my screams, my guttural cries, gnashing of teeth, writhing on the floor..... all of the experiences that have driven any of the rest of you to this forum. She has been there and I am ever grateful.

So surgery after surgery, pill after pill, therapy upon therapy, acupuncture, massage, chiropractic, this and that and STILL I go through this pain that BURNS and spasms that JERK my limbs. Funny, but it seems I have chronic neuropathic pain, the incidence of which is empirically demonstrable through one of those fun sessions with the EMG machine. At least we have a clue it is not all in my head..... well, not all of it.

So, this brings us to this morning. It is 29 March 2010. I sit here telling my wife I will get off of the computer right away because we go for the second meeting with my next surgeon in line, the fella who may implant the ANS EON Mini in me through that two step surgical process involving at first trial, and then the real deal.

I have been through the scared stuff. I have known and well remember the pain of deep penetration back surgery multiple times. I can do this. The EMG and MRI have been done and the surgeon will review these with me today... at least I hope he will. I will let you know what I learn.

Now to the point. It would be nice if anyone else out there has received ANS device implant work and what their experiences may have been. Was it favorable? Were there issues? Are you pleased? Is that ever present pain level more manageable now? How was it working with the ANS reps? Have you regained any of your former life, and if so in what ways?

I will share if you will. Oh, and next, in early April I get to meet with the psychiatrist to learn whether I meet the standards of an acceptable candidate. Cross your fingers or pray for me if you will.

Keeping my humor, I hope,
Mark56
Mark
I live in Orange County, CA, and was also a hard-charging exec until a fateful second in 2003 when my life changed forever and I was no longer an exec, mom, or musician. I have had an ANS SCS successfully installed since 2005. It replaced a Medtronix SCS, implanted in 2004, which proved to have failed due to a defect at the point of manufacture. I cannot speak highly enough about the ANS device or the support I have received from ANS. In October, 2009, I had a new, smaller battery installed and relocated to a new pocket from my hip to below my belt because my battery had shifted and it had become difficult for me to sit. The new battery has the benefit of being easier to recharge and holding its charge for an extended period. The ANS device has several advantages compared to the Medtronix device. First, it has enough leads to cover all four extremities. At the time of implantation, my RSD was only active on two extremities. However, we implanted leads for all four anticipating migration. Sure enough, my RSD did migrate to a third extremity one year later and my ANS device automatically handled the pain without any intervention on my part. The ANS device has the ability to be pre-programmed to store multiple programs, with a great range of sensitivity within each. Programming them is easy, done by their capable reps. In my physician's case, he has two full-time ANS reps dedicated to his office. They know every patient from the pre-surgery consultations, to the surgery suite, to being on-site during office visits. Every phone call is returned promptly. In the five years I have had my ANS device, I have required two replacement parts for my recharging equipment. The first time, the reps gave me their own equipment. The second time, I was leaving for my one and only trip since become ill with RSD and they FEDX'd the part to my hotel in Hawaii with a room service order of chocolate strawberries with a card to "feel better soon".

I was fortunate to have a specialist who is considered among the best in the world for SCS. I had consulted with others and ruled them out before finding him. I have sadly seen many with failed SCS's from other doctors. Here is what my doctor says is key to having a successful SCS. I pass his wisdom along to you. He says that the single most important factor is your choice of surgeon - that you must select the top SCS surgeon who performs the highest number of SCS implantations with the highest success rate with the selected vendor (i.e. ANS or Medtronix) He says that too many patients make the mistake of letting their pain management doctor implant their SCS, not realizing that their pain management doctor may only implant 10 SCS systems a year. Also avoid any doctor who requires you to sign up for other bundled services such as 30 days of PT, OT, stellate blocks, and pain management counseling as a package deal for their SCS implementation.

The trial itself will tell you if the SCS will or will not work. You will know instantly on the operating table. The downside is that the trial device is cumbersome and the stimulation from the trial device is more intense than the stimulation from the actual SCS. You will feel and look like Frankenstein, yet a thankful Frankenstein knowing that relief is available for your pain.

There is a minimum time period required by medical protocol between the trial and the SCS surgery to ensure that there is no possibility for infection in the trial incision sites. Your surgery will be scheduled once this period has passed. You will be awake for most of the surgery to be able to communicate to the doctor the successful placement of the leads. He will put you gently back under only when he needs to make incisions. The ANS rep will meet you prior to surgery, will be present during the surgery, and will meet with you post-op to review the basics about how to use your programmer and call your rep for assistance.

You will also be met post-op with a home healthcare nurse who will follow you home and set up your morphine drip to enable you to manage your pain for the first four days. He/she will visit you daily to monitor your incisions and the IV until it is discontinued.

The recovery from surgery requires six weeks and is more significant than expected. It is, however, the best investment you can make. You need to make accommodations during this time that for which the doctor does not prepare you, such as wearing only button down shirts, and no driving for at least three weeks, and sleeping only on your side, and no lifting of even the lightest things, and no showering for two weeks. But it is all worth it.

Before my stimulator, I was bedridden and only able to crawl within my own home. My neurologist had told me I would be wheelchair bound within one month.

I never needed to order that wheelchair once my stimulator was implanted! It changed my life. I cannot encourage you enough to proceed with your surgery.

There is research to indicate that RSD in patients who have an SCS implanted can go into remission or "disappear", SCS can be that significant. Doctors also know that SCS implemented within the first six months of the onset of RSD can have a significant impact.

SCS is fantastic, and ANS has a quality product with quality support. The key to success, however, is that your SCS is implemented by only the best of the best surgeons. And that is spoken by my doctor, who is one of the best in the world. I was just blessed to have found him. I hope you will be blessed in your journey. You have so many people behind you.
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